Hello I am new to the forum. My daughter was diagnosed almost two years ago with undetermined crohns. it started with severe belly pain, and constipation. i thought appendix and off to er. ct showed nothing. two months later she had a nine lb. wt loss. she could not afford b/c she is already very small. gi specialist we go after another ct and barium swallow with small bowel follow. all normal. gi doc asked questions and then she had a positive occult blood. next colonoscopy, abnormal tissue in TI biopsy normal. started pentasa. nine months later new doc did camera pill said looked normal and was not gonna diagnos crohns. off pentasa 8 months and just had severe d with fever normal stool cultures except for blood in stool and stool was positive for wbc. no one seems concerned enough to order labs to see if she is active. i think she really does have it, but everyone thinks i am a crz mom. this is the fourth day, d this am, had mucous with a little blood but she did not have a bm. that was all that came out....HELPPPPP

Well I am 21 and have had the same problems for about 9 mnths now. At first I just had belly pain with blood in my stool. They did multiple test to make sure that it was crohns. The pill endoscopy and biopsy on the colonoscopy revealed that I did in fact have it. From what I have read it is difficult to diagnose crohns and they want to be for positive before they start treatment. It is a long and rough process, but she will be okay with time. Symptoms will get better with treatment but you must stay positive. Good luck to you!DX: Crohns in March 2007Meds: Remicade

thanks for the reply.. its very hard to sit back and watch your child suffer, she is only 11 and i dont want her to go for years and years before we get a perminant dx. I am staying positive, but I feel like docs dont always listen

I would see a diff specialist and see their take on it. It seems odd how they can't get a proper DX for her.They did a lot of tests on her, something should show or know what's going on.

I see you mentioned they did a colonoscopy, but have they ever done a endoscopy, where they go down her mouth, to her stomach yet? They did that with me and didn't find it, but it can occur from the mouth right down to the butt. They found my crohn's in my small intestine by doing the colonoscopy.

Has she been tested for celiac disease, thats why originally they did the endoscopy for me.

I had D, gas and pain in my stomach.

Also, have you tried limiting foods that make her not well, like milk, beef, green veggies? A lot of people with crohn's can't handle certain foods. Let us know, remember we're here for ya! :)

DX with CD May 2006 @ age 22

Tried Pentasa and Entocort, worked for a yr and a bit

Now on prednisone 35mg and having some side effects, "..time goes by so slowly..."

thanks all who replied....She did have an EGD. That was by the first doc she saw that said she saw crohns in her TI. But she got switched to a diff GI doc in the same peds specialty group. and he said all is fine. but if you are not in an active flare up, the disease is caught early and you had been on pentasa for almost a year would they necessarily see anything by an invassive procedure. one would think that if you are in remission then all labs would be normal and so on.

Hi I am thinking that perhaps she could have hemmies . If you are concerned about her you could take her to emerg.Is she having pain with the D?I know it can be hard not knowing but if the Dr. said CD before then I would think she still has it because it is not curable perhaps there thinking colitis. Usually a flare comes with symnptoms like pain ,Fever D stuff like that. If her drugs don't work then she might need to try something else. THe big thing I guess is get her checked and the hospital do test if they have to .If you cain't talk to her GI then the hospital is the next step. Hope this helps lol gail

I know how ya feel. Doctors are getting worse by the day it seems like, I've had a hard time getting a doctor to listen to me as well. I'm sorry to hear that she is going through this at such a young age. Things will work out for you, if you are not satisfied with what one doctor says then go to the next. Don't give up until you are happy with the treatment your daughter is getting!!! :)DX: Crohns in March 2007Meds: Remicade